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Discussion Starter · #1 ·
In July of 2016, I became a dad for the first time. We had a little boy. His name is Lucas.

About 5 days after we got home from the hospital, we got a phone call. The results of the newborn genetic screening showed that he potentially had cystic fibrosis.

Cystic fibrosis (CF) is the most common fatal genetic disease affecting Canadian children and young adults. At present, there is no cure.

CF causes various effects on the body, but mainly affects the digestive system and lungs. The degree of CF severity differs from person to person, however, the persistence and ongoing infection in the lungs, with destruction of lungs and loss of lung function, will eventually lead to death in the majority of people with CF.

Typical complications caused by cystic fibrosis are:

Difficulty digesting fats and proteins
Malnutrition and vitamin deficiencies because of inability to absorb nutrients
Progressive lung damage from chronic infections and aberrant inflammation
CF related diabetes
Sinus infections
It is estimated that one in every 3,600 children born in Canada has CF. More than 4,100 Canadian children, adolescents, and adults with cystic fibrosis attend specialized CF clinics.
After a week or so wait time, we were sent for a sweat chloride test, and it confirmed the genetic finding - he has delta F508 mutation cystic fibrosis. On the flip side of the negative, this is the most common form of the illness, and is the one that sees most of the funding, and will likely be the first one with a long-term solution. At present the drugs currently treating this condition are between 4 to 600 dollars a dose, 4 times a day. Yes. Between 300,000 and 800,000 dollars a year.

I know there are a few members here who have it, and are dealing with it in their families also.

Every year our CF foundation puts on a charity walk, to raise money for research.

I am still coming to terms with the little dude having it, but it is slowly sinking in.

With treatment there are a lot more people living with it for longer periods than they ever were, but there are still shortened lifespan and several different complications that occur due to the condition.

I've attached a link for my "Team"'s page, and if any of you guys who'd like to donate could do so, it would be greatly appreciated and never forgotten.

Thanks in advance guys, it means the world to me.

If you need to donate in another manner, please feel free to PM me and I will get some details on how you can donate if you can't do it via the page provided, and you'd like to do so.

Thank you again.

YBTTF,

Aaron.


https://secure.e2rm.com/registrant/mobile/mobileTeamPage.aspx?teamID=751538&langPref=en-CA


 

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Mother Hen
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I am so glad to see you got it up and included that adorable picture of Lucas. I will try to make my donation tonight and if I have any problems, I'll let you know. He is such a cutie pie.
 

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Discussion Starter · #4 ·
Thank you guys, both of you. I appreciate the kind words and support.

Some days I deal with it okay, others I don't. I keep it together for them, they need me to be together more than I do.
 

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Mother Hen
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Thank you guys, both of you. I appreciate the kind words and support.

Some days I deal with it okay, others I don't. I keep it together for them, they need me to be together more than I do.
That's all you can do and all you need to do hon is be there for them. It's OK to have a breakdown every once in a while, but you get up, dust yourself off and go back at it again.
 

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Official Cactus Dealer
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Got some from me. The bullet chipped in $1500 when i was raising money for my daughter for Type 1 Diabetes so im just giving back. Best of luck to you and your lil buddy
 

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The Dude Abides
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I dont do credit cards, PayPal? Interac E-Transfer?
 

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I tried to donate but when I go to complete it the amount that gets put in the spot for the total is $4,139,928,535.00. I am glad to help but that is a little out of my budget. I will try again later.
 

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Discussion Starter · #14 ·
I tried to donate but when I go to complete it the amount that gets put in the spot for the total is $4,139,928,535.00. I am glad to help but that is a little out of my budget. I will try again later.
Damn! They'd name the walk after you!
 

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Discussion Starter · #18 ·
Doing some more exploring, I've discovered on the website I can enter donations that are done through other means. So if anyone wishes to use paypal, interac e-transfer, etc. will see their donation posted via that method, within 24 hours of receipt to maintain transparency, as I understand sometimes these things can be worrisome for some folks.

Thank you again to all who have donated so far, from all of us.
 
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